living well with hereditary pancreatitis, type 1 diabetes, and pancreatic cancer​

A coworker just sent a link to me, to today's Fresh Air interview with soul singer Sharon Jones. I'll admit that I hadn't heard of Sharon Jones, or her band The Dap-Kings, before today. But I'm glad I know about her now. Jones was diagnosed with stage II pancreatic cancer in 2013. She had major surgery followed by chemotherapy, but the cancer came back again. She's now back in chemo treatment, but continuing to work hard as a musician, recording and performing, even with her trademark energy and stage presence. There's a new documentary about her, Miss Sharon Jones!, directed by Barbara Kopple.

Although our pancreatic cancer diagnoses are different (and every person's cancer is different), many of Jones's experiences resonate with me. Terry Gross mentions a scene in the film when Jones forgot a few lines while performing. She told the audience she had chemo brain, and Gross says they were all totally with her, accepting and patient. I know that my friends, family, and coworkers feel the same way if I mention that I have chemo brain, but that doesn't ease my self-consciousness about it.

Despite what some doctors still say, chemo brain is real. It's memory loss, it's confusion and difficulty focusing. It makes me feel, in a very real and very personal way, that I am losing bits of my brain every day. I have always been very intellectual and analytical, and I'm not too humble to say that I'm smart. But in the last several months, I can feel that slipping away from me. Shortly after I started chemo in February, I realized that time had started passing differently for me. Sitting in my favorite armchair, reading, watching TV, or just being, I would look up from my dazed reverie and realize it was hours later than I thought. At other times, I would feel each minute repeating over and over, dragging on, but not as though I was bored or antsy. I just had no consistent sense of time anymore. Time was slipping and retreating, then coming back to catch me unawares.

Now, feeling older than I should at 30, I find myself standing in the middle of another room in the house, with no idea what I'm doing there. I think of something I need to do while I'm doing something else, then immediately forget the remembered task once I finish the task at hand. Sometimes I have to think of the same simple thing many times before I remember to actually do it. Just yesterday, I went to work with my husband's keys in my handbag without realizing it. The night before, when we came home together from a doctor appointment, he left his keys in the front door while he greeted our dog. I remember pulling the keys out of the lock, but I have literally no memory of what happened after that or how they got inside my bag. Whatever happened, apparently I immediately forgot.

And I used to be very skilled at multitasking and time management. I used to be able to engage in highly abstract discussions of philosophy and critical theory. Now I have to stretch my brain to stay focused on one simple work task for any extended period of time. And after thinking hard, I often feel tired and headache-y, like I've been squinting at a tiny screen for days on end. I hate having chemo brain.

Jones also mentions in the interview that when she's on stage, the pain is gone, because the energy she gets from performing either masks or relieves it. But she often has to pay for it soon after, maybe even right when she steps off the stage. I certainly know this phenomemon, since I often become unaware of my pain when I'm busy at work or focused on some kind of physical activity. Sometimes I can distract myself from my pain with focused mental activity, but the physical kind seems more effective. Of course, I can't always do physical activity, depending on my pain and other symptoms, but when I can, I often notice somewhere in the middle of things that I can't feel any pain. For example, earlier this week I presented story time at my branch. I had to move furniture to make room for the program on the floor, and then set up my carpet squares, flannelboard, and display books. During my set-up, I had pain off and on, but during the story time itself, as I sat on the floor and projected my voice and jumped and danced around with shakers, I couldn't feel a thing. Within a few minutes after finishing the program, though, as I was packing up and rearranging the furniture, it all came roaring back. And for the rest of the day, I certainly felt the effects of that intense physical activity, as distracting and enjoyable as it was.

At another point in the interview, Jones describes how cancer has changed her. She notes that her hair is gone and her energy is not the same, so when she performs now, she feels like she's a different person. I completely understand what she means. Cancer can't help but change who you are, in superficial details and, I think, in some fundamental way. But they're not all bad changes. Maybe cancer makes you more mindful, more appreciative, better at prioritizing and saying no. Maybe cancer makes you stronger, as our society loves to believe. Maybe cancer makes you a softer, calmer person. But really, no matter what you do, as Sharon Jones says, "the cancer is here."